Hello and thanks for joining us. We’ll be kicking off the chat in just a few minutes, but if you have a question, you can go ahead and get it in queue.
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Please join me in welcoming our experts.
Amy Perrin Ross, APN, MSN, CNRN, MSCN, is an advanced practice nurse who serves as the Neuroscience program coordinator and the manager of the MS clinic at Loyola University. She is certified by the American Board of Neuroscience Nurses and by the Multiple Sclerosis Nursing International Certification Board.
Michelle Cameron, MD, PT, is a neurologist and physical therapist specializing in MS. She is an assistant professor in the Department of Neurology at Oregon Health & Science University and is a staff neurologist at the VA Portland Health Care System.
Jacqueline Bernard, MD, is an assistant professor of neurology at the University of Chicago Medicine. She has more than 20 years of experience caring for patients and is a lead investigator for MS clinical trials.
Please note that the views expressed in this chat are those of the individual experts and do not represent those of their employers – University of Chicago, Loyola University, OHSU, the VA Portland Health Care System, or any other organization.
Let’s start with some questions from readers.
MS symptoms can appear at any time. It can start in childhood and continue throughout life. People can experience their first symptoms in their adult life and even late adulthood including people in their 60’s and 70’s.
Research is being done on stem cell therapy for MS. We hope this will be successful based on animal studies, but unfortunately, as with all research, we don’t know what the findings will be.
I suggest contacting your local National MS Society and MS Association of America, and check if there are local organizations. Also, some community centers and medical centers have support groups and activities for people with a range of chronic diseases. And, don't stop socializing with everyone else!
Getting out as much as possible is important to remaining active. When that is not possible, chat groups sponsored by the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America are great ways to remain social.
Antigone: There are many new choices besides Copaxone and interferons for treatment of RRMS. These are best discussed with your treating neurologist. There are infusions, injections and orals, all of which can be considered for individuals with Bipolar disease. But best to discuss in the context of a clinic visit with an MD that knows you.
I suggest trying to get a neuropsych exam to help sort out what your cognitive strengths and weaknesses are and why. You may find that MS advocacy groups – National MS Society, MS Association of America, or a local organization – may be able to help with both referrals and the cost of this. Also, this may help with re-applying for SSD.
Ocrelizumab is a monoclonal antibody which is currently in clinical trials. The results of the phase 3 clinical trials in relapsing remitting MS and primary progressive MS were recently presented at the ECTRIMS meeting in Spain. Once the data is finalized it must be presented to the FDA for consideration. The FDA then reviews it and makes a recommendation which may include approval. This process may take up to a year or longer so while we remain hopeful for all new treatments on the horizion, the process takes time.
In general, exercise with initial guidance from a physical therapist, can help you improve your strength.
MS changes over time. It would be important to see your doctor to determine what is going on. Weakness may be due to other things such as bladder infections that need to be evaluated and treated. The less we do the less we are able to do and this is called deconditioning. Talk to your doctor about starting an exercise program or beginning physical therapy to re condition those muscles.
Medical cannabis isn't proven to be a first -line treatment for anything in MS but there is some data suggesting it may be helpful for spasticity. Beware, cannabis may affect your cognition. Exercise and good adherance to your disease-modifying medication is the best strategy.
Botox helps muscle spasticity by interfering with the connection between the nerves and the muscles. It generally lasts 3-6 months.
Secondary progressive MS is usually diagnosed in retrospect when we realize, looking back, that relapses, clinical and MRI, have pretty much stopped and that there is gradual progression of disability over time.
Educating yourself and your family is very important. The Multiple Sclerosis Association of America , the National Multiple Sclerosis Society and the MS Foundation are excellent resources of educational material. They can be obtained on via web or by calling the organization. MS is different in everyone and often the “stages” do not have a clear beginning and end. Remaining in an open discussion with your healthcare team is important to best be able to manage what MS throws your way.
There is research showing that menopause may be associated with worsening of MS. Of course, it is hard to completely separate effects of aging! Hot flashes should be treated to aid with good refreshing sleep, which everyone needs to help with energy! If you snore , you may need a sleep study. Regular exercise and Vitamin D, along with your disease-modifying therapy are very important.
Yes, as people age they are more likely to have secondary progressive MS, whenever their MS started.
Actually, a lumbar puncture will be just as informative for MS whenever it is done. However, if your doctors are thinking you may have something else it may be important to have your lumbar puncture when you are symptomatic.
We wish all of our MS patients had mild MS! Symptoms are often the tip of the iceberg however, and it is important to prevent development of any new lesions.. All of us who treat MS patients believe that MS should be treated with disease-modifying drugs, and this is a standard guideline of the AAN. It is all about prevention!
You should discuss with your neurologist about the many options out there- I am confident you will find a treatment you can live with!
Currently there is nothing available to reverse MS. The best approach is to try to prevent further symptoms by living a healthy life style including diet and exercise. Exercise is very important even for those who are in a wheel chair. A physical or rehab therapist with special MS training can make some excellent suggestions to maximize function. Keeping mentally healthy by exercising your brain with discussions such as these is important.
Penny, increasing sensory symptoms when you are exercise are not unusual in people with MS. Making this happen through exercise is not doing you any harm. As long as the symptoms aren’t too bothersome I recommend continuing the exercise for the good it can do you.
Balance therapy often helps people’s balance but, like most treatments, we really can’t know if it will help you without trying it.